The feasibility of home monitoring of young people with cystic fibrosis: results from CLIMB-CF
File(s)
Accepted version
Author(s)
Type
Journal Article
Abstract
BACKGROUND: CF is traditionally assessed in clinic. It is unclear if home monitoring of young people with CF is feasible or acceptable. The COVID-19 pandemic has made home monitoring more of a necessity. We report the results of CLIMB-CF, exploring home monitoring's feasibility and potential obstacles. METHODS: We designed a mobile app and enrolled participants with CF aged 2-17 years and their parents for six months. They were asked to complete a variety of measures either daily or twice a week. During the study, participants and their parents completed questionnaires exploring depression, anxiety and quality of life. At the end of the study parents and participants completed acceptability questionnaires. RESULTS: 148 participants were recruited, 4 withdrew prior to starting the study. 82 participants were female with median (IQR) age 7.9 (5.2-12 years). Median data completeness was 40.1% (13.6-69.9%) for the whole cohort; when assessed by age participants aged ≥ 12 years contributed significantly less (15.6% [9.8-30%]). Data completeness decreased over time. There was no significant difference between parental depression and anxiety scores at the start and the end of the study nor in CFQ-R respiratory domain scores for participants ≥ 14 years. The majority of participants did not feel the introduction of home monitoring impacted their daily lives. CONCLUSIONS: Most participants felt home monitoring did not negatively impact their lives and it did not increase depression, anxiety or decrease quality of life. However, uptake was variable, and not well sustained. The teenage years pose a particular challenge and further work is required.
Date Issued
2022-01
Date Acceptance
2021-09-22
Citation
Journal of Cystic Fibrosis, 2022, 21 (1), pp.70-77
ISSN
1569-1993
Publisher
Elsevier
Start Page
70
End Page
77
Journal / Book Title
Journal of Cystic Fibrosis
Volume
21
Issue
1
Copyright Statement
© 2021 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved. This manuscript is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Licence http://creativecommons.org/licenses/by-nc-nd/4.0/
Sponsor
Guys & St Thomas NHS Foundation Trust
Cystic Fibrosis Trust
Cystic Fibrosis Trust
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/34635459
PII: S1569-1993(21)01423-5
Grant Number
B1068
VIA 027
SCA002
Subjects
Anxiety
Depression
Digital technology
Feasibility
Home monitoring
Publication Status
Published
Coverage Spatial
Netherlands
Date Publish Online
2021-10-08